I just took my first 120mg starter dose of Tecfidera... I had read about the possible side effects like flushing, nausea, stomach cramps, etc... (and I preface this by adding that I'm not the, "whiner" type)... but Holy Cow!! It was horrible!
I had already asked a Biogen nurse the best way to take it and she said it helps to eat something with a high fat content in it before you take it, so, I obliged.
After about 20-25 minutes, I got a jolt-like hard stomach cramp, and within 5 more minutes was bright red all over my upper body..to call this, "Flushing" is a huge understatement... I've had a niacin flush... but this was like burning heat... like a sunburn so bad that your skin gets boils... the itching was intense... I couldn't stop for a second... my face felt swollen... even my head & inside my ears burned & itched at the same time... this lasted about 45 minutes, then I started to get very shaky and had the sensation of not only the burning/itching skin... but chills & weakness, my stomach started to rumble like crazy and I got the diarrhea warned about on the possible side effects list... then, the red flushing & red itchynskin moved to my lower body.. I just felt weak & cold... it is now about 2 hrs. later, and although my skin still burns a little... it doesn't itch... My question is this: Has anyone had a reaction this bad... when some of you say it gets better after a month or two or three... do you mean you went through this 2x a day for that entire time? Like I said, I've had MS for 4 years, did the Copaxone shots with no side effects at all other than site reactions & lipoatrophy (spelling?) ... I've been through alot with MS (have about 22 brain lesions and many spinal cord/myelin lesions)... but I'm not a whiner...
I was just shocked at how awful the side effects were... and afraid that if this is what happened on one dose of 120mg... what will 240 mg. do!?
and question #2: Have any of you noticed any hair loss... how common is it?
Thanks in advance if you have any experiences/feedback that can help & I wish you the best in managing your MS.